FH Europe Foundation is sharing an official communication from Novartis concerning the discontinuation of its pelacarsen development programme. We also provide background on the Lp(a)HORIZON announcement and outline how FHEF is independently engaging with its community and scientific experts to support informed discussion and next steps.
On 16 October 2026, FH Europe Foundation (FHEF) received an official communication from Novartis, addressed to patient organisations and patient advisors, concerning the company's decision to discontinue the pelacarsen clinical development programme for atherosclerotic cardiovascular disease.
In its letter, Novartis acknowledges the disappointment this decision may cause among patients, families and those who contributed to the research. The company also confirms that the detailed findings from the Phase III Lp(a)HORIZON clinical trial will be presented at the American Heart Association Scientific Sessions in November.
At Novartis's request, FHEF is sharing the company's official communication with the wider patient community. The letter is provided in its original form and reflects Novartis's own position and decisions.
Read the official Novartis Patient Community Statement – 16 October 2026
On 4 September 2026, Novartis announced the topline outcome of its Phase III Lp(a)HORIZON clinical trial. The trial involved 8,323 people with elevated lipoprotein(a) [Lp(a)] and established cardiovascular disease, who were already receiving guideline-directed treatment. It investigated whether lowering Lp(a) with pelacarsen could reduce cardiovascular events. According to the company's announcement, pelacarsen lowered Lp(a), but the study did not meet its primary composite cardiovascular endpoint. Importantly, no detailed clinical trial results have yet been publicly presented. The September announcement communicated the topline outcome only. The detailed findings are scheduled to be presented on 7 November 2026, during the American Heart Association Scientific Sessions.
On 7 September 2026, following the Novartis announcement, the Lp(a) International Task Force (ITF), chaired by Prof. Florian Kronenberg and supported by FHEF as its Secretariat, issued an independent scientific statement. The ITF emphasised that the complete trial data, including individual cardiovascular outcomes and relevant subgroup analyses, must be examined before definitive scientific conclusions can be drawn. Importantly, the Task Force reaffirmed that elevated Lp(a) remains a well-established, genetically determined cardiovascular risk factor.
The outcome of this individual trial does not change the importance of Lp(a) testing, early identification of inherited cardiovascular risk and comprehensive prevention.
Read the Lp(a) International Task Force statement – 7 September 2026
Following receipt of the Novartis letter, FHEF took the initiative to convene a dedicated online discussion with its Lp(a) Ambassadors and Patient Council representatives, including people who had participated in the Lp(a)HORIZON trial. Prof. Florian Kronenberg, Chair of the Lp(a) International Task Force, joined the discussion to provide scientific perspective and respond to questions. The discussion provided valuable insights into the information, support and engagement that matter most to people living with elevated Lp(a), particularly those who have contributed to clinical research.
Several priorities emerged:
These discussions reinforced the value of meaningful patient engagement throughout clinical research and the importance of working together to improve communication, understanding and trust.
NOTE: Communication with clinical trial participants
Under international Good Clinical Practice, communication with individual clinical trial participants is generally managed through investigators and clinical trial sites. Investigators are responsible for promptly informing participants when a trial is terminated or suspended and ensuring appropriate medical care and follow-up.
Sponsors have separate responsibilities for communicating with investigators, institutions and regulatory authorities. Direct communication between sponsors and individual participants may also be subject to consent, confidentiality and data protection requirements.
FHEF provides this general information to help clarify the established communication process.
The detailed results of the Lp(a)HORIZON trial are scheduled to be presented on Saturday, 7 November 2026, during the American Heart Association (AHA) Scientific Sessions in the United States. These findings will be important for understanding the trial outcome, including the observed cardiovascular effects, the individual components of the primary endpoint and relevant subgroup analyses. Until these data are publicly available and independently assessed, it remains premature to draw definitive conclusions about the implications for Lp(a)-lowering therapies more broadly.
Beyond sharing the Novartis communication, FHEF has brought together its Lp(a) Ambassadors, Patient Council representatives and scientific experts, and is taking further steps to facilitate dialogue with other relevant stakeholders. These activities reflect our ongoing commitment to supporting people living with elevated Lp(a) and their families through reliable information, meaningful dialogue and patient-centred advocacy.
Following our discussions with Ambassadors, Patient Council representatives and scientific experts, we have identified the following priorities:
The developments and their broader implications for clinical research, innovation and patient involvement will also inform discussions at the FH Europe Foundation Annual Network Meeting 2026 in Dublin, 6–8 November.
Details of the public webinar, including its date, speakers and registration, will be shared through FHEF's communication channels.
The announcement concerning Lp(a)HORIZON has understandably generated disappointment and uncertainty, particularly among people who participated in the trial and those awaiting new treatment options. Nevertheless, elevated Lp(a) remains an important inherited cardiovascular risk factor. Knowing one's Lp(a) level can help inform cardiovascular risk assessment and personalised prevention strategies.
FHEF and the Lp(a) International Task Force remain committed to advancing awareness, early detection, evidence-based cardiovascular prevention, meaningful patient involvement in research and equitable access to care.
For FHEF, the priority is to ensure that people living with elevated Lp(a) are informed, heard and meaningfully involved in the discussions that affect their health and future.